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My father just diagnosed....lots of questions.


Guest migizicny

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Guest migizicny

Hi all. I am looking for suggestions on what we need to ask at the 1st visit with the oncologist. My dad, 69, was tentatively diagnosed with Stage II NSCLC. It will not be confirmed until after his PET Scan tomorrow. It all started with him feeling tired and a little short of breath. Went to his PCP, had CXR, had CT, had bronchoscopy, told he had lung ca.

He is scheduled to meet with an oncologist on July 10th. Kicker of it is, is that I am a fairly new oncology RN. Funny how I know what to say and do for my pt's, but not for my Dad.

Questions- 2nd opinion right off the bat?? What should we be asking at the initial visit?? Chemo before surg and after??? Nutritional guidance??? How do you cope when you live 1000 miles away from your affected family member???

I am open to any and all suggestions. Also, any referrals to check out in the Rockford, IL area.

Thanks,

Lisa :?::?

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Hi Lisa,

Alway sorry when a new person needs to find our board - but welcome. I didn't get a second opinion per se - because I was diagnosed in CA and then treated in FL. But, I took it by what the onc told me - in my case, he was very open about what my options were, what he would recommend and basically pro's and con's of both.

Being a onc RN, you have excellent sources for what additional information you might need.

Good luck. And again, so you find your self here. Feel free to vent, ask questions or what ever you need. Everyone on the board is most helpful.

Mary

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Welcome Lisa. I am an RN also. Never specialized in onocology but-

When I went to the doctor for shoulder pain nearly 9 years ago and was told instead of the ortho referal I was expecting that I had lung cancer - I knew pain was not an early symtom of lung cancr so I just knew I was a gonner. Boy did the tears flow!

Well hear it is 2006 and I am going to work 3-11:30 this pm. I am alive , well and healthy. I went to curves and exercised this morning then took the dogs to exercise at the dog park. I pray that your Dad responds well to treatment. Keep us posted.

Donna G

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Welcome, Lisa! Glad you found us. A PET scan is not definitive for cancer. Only a biopsy can do that. So I would question the doctor about that. Ask what the game plan is as far as treatment and side effects.

A second opinion is a good thing, I believe. We held that option open, but have been pleased with Lucie's onc and his approach all along so we have not felt we needed to do that. I have learned a lot here as far as what treatments poeple are getting for the various stages, and that has helped form some questions as well.

Keep us posted, and tell us what you need as you go along. Don

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Hi Lisa and welcome to the lchelp boards. A PET scan will give you more information. Did the bronchscopy test positive for NSCLC? It is fairly reliable for positive results. If the bronchoscopy tested positive for NSCLC, your dad proably does not need any more biopsy other than for lymph nodes. I have been told that a PET scan is very good for detecting cancer in lymph nodes. Perhaps a follow up with a mediastinscopy would be good to confirm the PET scan re lymph nodes.

I think a common practice for stage II cancer is to pretreat the tumor with chemo and some radiation then operate then do followup treatment possibly both chemo and radiation. They would not want to radiate too much before the operation so that the surgeon won't have to deal with scar tissued lungs.

I am a big fan of targeted radiation. The tumor(s)can be killed or shrunk considerably while minimizing damage to adjacent lung tissue. Check out Cyberknife surgery and image guided rdiation therapy (IGRT).

http://www.cyberknifesupport.org/forum/default.aspx?c=4

The cyberknife message board is managed by radioation oncologists who are very helpful and answer within 24 hours.

http://www.elekta.com/site_dbase.php?fo ... _id=101495

The above link is an overview of IGRT using the Electa Synergy system.

Since it is your first visit with the oncologist, see if you can get someone else to go with you and your dad to sit in as a second set of ears and maybe help take notes.

I hope your dad gets the cancer nipped while it is still early.

Don M

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Welcome aboard Lisa,

First take a deep breath....it definitely is overwhelming, but you have come to an incredible place, you will get alot of insight.

Just remember there are no stupid questions, so whatever you want to ask the onc. ask..

My mom would always say when anyone was explaining something complex, she would say explain it to me like you were talking to a 5 year old....because your head can go everywhere....but once again welcome.

Grace

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Lisa,

Wow. You have alot on your mind right now. I am so, so sorry. My sis is going through what you are, she lives in Texas, and my dad is in northern Nebraska. It has been tough. I feel bad for her, as it seems that she is out of the loop quite a bit. She didn't realize Dad was "so bad" and that was hard on her when she saw him. Being in the loop requires lots of phone calls though, and I don't know how much she did that. I was probably to fault as I needed to be more honest with her from the start. I just didn't realize what she wasn't "getting." Does that make sense?

As far as your question about the second opinion...we got one right away from Mayo in Rochester, MN. I can say that it was easily the best choice we ever made. My parents live in small town USA. Dad had the type of cancer that grows extremely fast. They were going to have him wait 5 days to see a "lung specialist" and then who knows how long to see an onc...it turns out he had superior vena cava syndrome, and didn't have 2 weeks to wait. So...we were glad for the second opinion. Of course, it was a bummer driving to Mayo all those times, but we knew they were the best. How far is Mayo from Illinois? My parents met some people from Illinois there, in fact.

Anyway, I hope you find some peace in all of this. We are all going through a most difficult journey. May God grant you that peace, and may you get some needed answers.

God bless,

Jen

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Lisa,

In terms of referrals in the Rockford area, I would like to suggest any of the Chicago teaching hospitals. I go to the University of Chicago, and my care there has been wonderful. They are consistently ranked near the top in the US News and World Report yearly rankings of the top hospitals in the country.

There is also Northwestern Memorial Hospital. My sister went there for her breast cancer diagnosis and surgery and had great care. Rush-Presby.St.Luke's is another and Loyola Medical Center are also Chicago hospitals. I'd be going to a hospital where they see cases like his all day long and know exactly what to do. From Rockford, they are only a couple of hours away at the most.

If chemo is involved, it's not necessary to get that at the Chicago hospital, but any kind of diagnostics or surgery would be well worth the trip, in my opinion.

If you do decide to get a consult, you need to take your films with you. It won't probably be necessary to get the tests redone.

I feel that my association with the University of Chicago was the very best thing that happened to me during all of this.

Good luck to you, and if you want some details about the U of C, please PM me.

Cindy

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Hi Lisa,

Welcome. Sorry to have "met" you at this board. I would definitely hear out the treatment options and seek a second opinion. You just never know if there is an oncologist out there who would be willing to treat your dad aggressively.....

I'm sure that your training as an oncology nurse will help you out more than you know right now, but I also understand that it has no bearing now since it's at such a personal matter.

Good luck.

Shirley

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I wanted to speak to the 1000 miles issue...

I was 2000 miles away from my Mom when she was diagnosed. It was hard. Very hard. I still can't tell you which was harder--being 2000 miles away wondering what was going on every single day, or being right there with Mom seeing what was going on every single day. Both spots were really heart-breaking.

What can you do? Make LOTS of phone calls. BUT don't expect that your Dad will always want to talk, espcially during treatment. Roll with the punches of the conversations that you have.

If at some point you feel like you NEED to be there--By all means GO! No matter what happens you WILL NOT regreat time that you DO spend with your family at this point.

Your a nurse.... Maybe you're not so into this, but I know my SIL who is an NP can be a little sneaky and call docs and stuff to find out what is really going down with certain family members--of course family member ok is important--that might be a good way to help you stay involved and to help advocate.

It is hard to be so far away. It is very, very hard. But you CAN be a support and you CAN be in the loop at least to a point.

I'm sorry you have the need to be here. Many prayers for your Dad and for your family.

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I like to encourage 2nd and even 3rd opinions. The treatment part of beating cancer is the most important aspect. So is the 2nd, 3rd, 4th, and 5th, according to long term lc survivor, Richard Bloch.

You have been given great advice. Crossing our fngers that surgery is an option for your Dad! We are a pretty knowledgeable team here.

Settle in and hang on. This whole experience will make you an even better nurse to your patients. You will be able to encourage each other with more compassion and heartfelt tenderness. Your patients will become endeared to you and you to them when it goes on a personal level.

Cindi o'h

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Carry an oeganizer with you for apptmnts. Write down everything you can think of. treatments Apptmnts Tests results questions and of course all meds dad is on. Ask questions like what to expect, what side effects, options, names of drugs , radiation treatments, anything and everything. Sending prayers and let us know results.

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